Recognition and Supports for Australians with ADHD within the NDIS

“Everyone deserves a chance to Shine”

INQUIRY INTO CURRENT SCHEME IMPLEMENTATION AND FORECASTING FOR THE NDIS

28th February 2022

PO Box 22 Epping, NSW www.adhdfoundation.org.au info@adhdfoundation.org.au Tel: 1300 39 39 19

Who we are

The ADHD Foundation Limited is a registered charity with DGR status and a leading ADHD organisation representing the interests of people with ADHD nationally. We are a not-for-profit and non-government organisation. Our membership is comprised of people with ADHD and related conditions, family members and other personal supporters of those individuals, organisations and medical professionals who support and treat ADHD and related conditions.

Our mission is to improve the wellbeing and help people with ADHD and related conditions to live independent and successful lives where reaching their potential can be achieved.

Our vision is to strive to be direct makers of change through collaboration and communication.

We work to improve outcomes for individuals with ADHD through community education, support, advocacy, collaboration, and policy reform so parents, children and adults with ADHD are not discriminated against, and have access to accurate information and evidence-based treatment. In this age of information, we pride ourselves on ensuring the information and self-help resources available through our website (https://adhdfoundation.org.au) is accurate and evidence based.

The ADHD Foundation has established the ADHD National Helpline, providing Australia’s only national, ADHD specific support and information line. It is staffed by volunteers who have specialised knowledge of ADHD and continues our high standard of ensuring information and support given to people in relation to ADHD is accurate and supported by evidence. At the same time, the Helpline provides our staff with lived experiences of individuals, their loved ones, educators, and healthcare providers throughout the lifespan and across the country. This understanding of how ADHD influences the lives of individuals with ADHD further informs our advocacy for policy changes to improve outcomes for Australians with ADHD.

ADHD as a Disability

ADHD is a neurodevelopmental disorder, characterised by difficulties with attention, short term memory, organisation, impulsivity and emotional dysregulation (DSM 5). It is a Disability identified in the Federal Disability Discrimination Act 1992. Like all disabilities it has a spectrum of functional impairment.

ADHD affects between 3-7% of the population, with a more than a million Australians reaching criteria for a diagnosis of ADHD.
In 2015, ADHD was identified as the most common mental health condition affecting young people in Australia in the latest child and adolescent mental health national survey, affecting 7.4% of young people (The mental health of children and adolescents | Australian Government Department of Health).
The cost and far-reaching impact of ADHD to the Australian community is comprehensively detailed in the social and economic costs of ADHD in Australia report (Deloite Access Economics, 2019).
Under the current assessment and treatment provisions, the cost of ADHD to the Australian community in 2019 was over $20 billion per annum.
Conversely, the 2021-22 Portfolio Budget Statement (PBS) for Social Services predicts an annual budget of over $33 billion for the NDIS by 2024-25.

ADHD is highly treatable, having been subject to research for many years. The current gold standard for treatment includes medication with concurrent adjunct therapy. The majority of adults and children with ADHD are not able to access therapy or support that would help them to develop skills in areas they have difficulty with. This is essentially comparable to having over a million people who need glasses, then telling them funding only allows them to look at the glasses they could choose if they can independently afford the eye test, which is of course more difficult because they have difficulty working all day because they get headaches, because they need glasses.

In spite of the prevalence, its disability status and the cost to the community both economic and wellbeing, the NDIS has never formally accepted those with ADHD as having a disability.

Whilst a diagnosis is now not required, the non recognition of ADHD means there is a lack of understanding of the type and amounts of supports required, and no willingness to engage in dialogue to improve access and supports to this large group of disabled Australians.

It is widely accepted that ADHD is under diagnosed, especially in adults, which commonly leads to high levels of psychological and physical co-morbidities. It is often these co-morbidities which are used to access the NDIS. People with ADHD also have higher mortality rates than the normal population.( JAMA Pediatr. doi:10.1001/jamapediatrics.2021.6401.) .

We offer an alternate approach, to recognise and accept ADHD to the NDIS, provide early intervention and support to individuals and their families, reducing the incidence of subsequent co- morbid conditions, which cause further detriment to individuals and the healthcare system.

Following consultation with the ADHD community, the following three key issues from the Interim Report were identified as being of most concern, some of the conditions referred to are co-morbid, due to ADHD not being an acceptable condition.

1. Decision making in relation to access and planning decisions

Complaints regarding access and planning have escalated during the last 12 months, with some professionals suggesting that most if not all Plan Reviews are not reflecting their input, and do not meet reasonable expectations.
Complaints relate to information given to the LAC is not reflected in the plan.
Goals are changed or added to.
Supports are refused on the basis that they are not on the list of supports for the condition. This is in spite of the reports of their helpfulness from the participants and their professional supports. This appears in contradiction of the NDIS Act and the ethos of being person- centred.
Assumptions being made by planners who have not had access to the participants. In an extreme case, planning notes show that the Planner decided the primary disability was a symptom of the secondary disability, with no medical evidence or clinical opinions to support this. The primary disability was subsequently deleted.
Specialist reports being totally ignored, with the perception that they have not been read, leading to important omissions, such as ignoring a new co-morbidity or exacerbation of the condition.

The response to plans which do not reflect what has been discussed in the planning meeting with the LAC or the documents ranges from despair and resignation, to anger and determination to fight the rulings, by going to AAT.
Gaining access to the scheme has become more difficult. The move to teleconferencing is particularly challenging for children. Talking to strangers is difficult in itself, but while they enjoy screens to play games, they often do not like telehealth sessions.
Challenging decisions is very difficult, especially if you are disorganised. Advocacy is in short supply. Lawyer fees are prohibitive for ordinary families, yet for one family they were face by 3 lawyers from the NDIS at the first AAT hearing, and have had to deal with 2 in subsequent hearings.
Plans are increasingly prescriptive about what supports are included in funding Capacity Building, which often is at odds with the participant’s requests supported by their specialist team. Some supports are added which have not been found helpful but appear to reflect what the NDIS thinks are necessary. These trends towards restricting choice rather than valuing person-centred justification is in direct contrast to the spirit in which the NDIS was founded.
Access for children with ADHD is almost impossible, it is often considered a learning disability and the province of the education department. Children spend more time out of school than they do in it, they learn much information about the world in this time, as well as develop life skills. ADHD interferes with this learning, particularly in the practical application of life skills.
Some children with ADHD have associated language and motor difficulties, requiring therapy which is not available for most children in the health system after they turn 8, which means that only families with the means to pay for private services can benefit – an inequity.
The current lack of support for individuals and families of people with ADHD means parents are trying to meet these needs, often with other children to manage. ADHD is highly hereditable, so often siblings and at least one parent also has ADHD, increasing the already considerable efforts required by parents to meet their child’s needs. It is widely acknowledged that the rates of women who are undiagnosed is significant. Knowing that ADHD is highly hereditable, what we are currently asking of families is for parents with undiagnosed or at the very least diagnosed but under-treated ADHD to develop life skills and self-regulation skills at the same time as teaching them to their children. Attempting to do this comes at a high cost to parents and other family members even without consideration of the care needs of people with other diagnosed chronic health conditions or disabilities. The cumulative burden on families is immense and is ignored by the current system.
Comments such as it’s the Education Department’s responsibility, or a parent’s responsibility without looking at the family picture as a whole increase parents feeling of guilt and failure. They are doing their best with a difficult situation, a complete lack of understanding for how comprehensively ADHD can impact a person’s life and how isolating it can be to try to be both a parent and therapist to your child, makes their situation worse.

Concerns have been raised about the amount of money spent on legal fees by the NDIS.
Participants have been charged for services not rendered because the Plan managers pay without consulting the client first. Even when there is a clear case of fraud some participants are told to make a complaint to the Police, despite indications that they are vulnerable or may have difficulty accessing and communicating with police.
A common complaint is the cost of assessments, whilst longer plans will help, some investigation as to whether there is overcharging would mean that suppliers would be subject to more boundaries or perhaps assist towards developed fee-for-service pricing guides.
There is a shared perception of price gouging by service providers, with some reports of people seeking an NDIS and non-NDIS quote for services with varying amounts being quoted for the same service.

3. Trust between the NDIA and people with disability

There can be no trust when those with a disability talk to a LAC about their condition and needs, and the Plan which comes back reflects, in some cases profound miscommunication. A very common complaint is that the participant’s voice has been ignored.
The number of cases going for review and then proceeding to an AAT review, shows that there is profound dissatisfaction with the process.
The Planners have no obligation to follow the plan developed by the LAC in consultation with the participants. There appears to be no accountability when a Planner does not ensure a participant’s plan is executed as discussed and decided in collaboration with the participant. At the same time, the process for participants to have their plan amended when it has not included important supports or relevant funding is very difficult and protracted. It is concerning that there appears to be a lack of accountability for Planners who are making key decisions and finalising support plans at the same time as consumers are saying they aren’t being listened to and don’t feel that their support needs are understood or sufficiently met.
There also appears to be no accountability for the LAC regarding the quality of the plan they submit except for a continuing relationship with the participant. If the plan is poorly constructed by the LAC, the support documentation should be reviewed by the Planner to ensure quality plans are developed. In the past Planners have asked to talk directly to service providers and participants for further clarification, this appears not to be happening currently.
The reports of the complaints process is there is an apology, and that the complaint has been passed to the appropriate department, and the complaint has been closed. There is no resolution.

With the level of current miscommunication there cannot be trust.

Recommendations

The NDIA accept ADHD as a serious, and prevalent disability and enter into communication with consumers and professionals within the ADHD Community to learn about how ADHD manifests as a disability and what type of supports are helpful.
The NDIS Act puts the participant in charge. In the training video, a participant in the video says she would like to go to an event, her support worker says, let’s do it. For those with moderate to severe ADHD, their impulsiveness, difficulties with planning, poor time- awareness and other symptoms constantly get in the way of achieving goals. With specially trained support workers they can develop and use strategies to mediate such symptoms in a constructive and goal-oriented way. The costs in continuing to not do this virtually speak for themselves with the current cost of over $20 billion dollars per annum being comparable to the annual budget for the entire NDIS. This provides a choice in continuing with the same approach and experiencing the same outcomes or addressing support needs and realising long-term savings.
There is accountability at all levels of the planning process.
There is an open system reporting participant satisfaction, as the current method of complaints through social media leads to no constructive action. This could have a threshold which triggers a complaint which is dealt with fairly.
The complaints system be used more constructively to settle disputes before going to AAT. Currently there is no dispute resolution at an earlier and more cost-effective level. The request for a review is one way, with information coming in and no negotiation. People with disabilities battle all their lives to live the best way they can. The NDIS is a scheme that makes a difference, but yet again they have to battle to get what they need to reach their potential. At least put in mechanisms that are more participant friendly.
Fund more advocates.
More focus could be made on discussing how supports can be made more cost effective. People providing capacity building supports are asked to be accountable at review for the effectiveness of their support, but core supports less so.
Work with families with Neuro-developmental Disabilities, look at the total burden on the family and the best ways of assisting with that burden.

Please do not hesitate to contact us for further information

Chair ADHD Foundation PH: 1300 39 39 19